Kristanti et al.

BMC Palliative Care (2017) 16:4

DOI 10.1186/s12904-016-0178-4

RESEARCH ARTICLE Open

Access

Enhancing the quality of life for palliative

care cancer patients in Indonesia through
family caregivers: a pilot study of basic
skills training
*
Martina Sinta Kristanti , Sri Setiyarini and Christantie Effendy

Abstract
Background: Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in
Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are
not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to
evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative
care cancer patients in Indonesia.
Methods: The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer
patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and
oral care, as well as feeding at bedside. Patients QoL were measured at baseline and 4 weeks after training using
EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and
one-way ANOVA were used to check in which subgroups was the intervention more significant.
Results: The intervention showed a significant change in patients global health status/QoL, emotional and social
functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male
patients had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on
dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/
QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers
between 45 and 54 years old had significant effect on patients dyspnea (p = 0.031).
Conclusions: Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative
cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-
economic and cultural challenges in the provision of palliative care in Indonesia.
Keywords: Indonesia, Basic skills training, Palliative care, Quality of life, Cancer

Background the needs of the patients through primary health care and
Chronic non-communicable diseases such as cancer pose a appropriate referral systems [1].
major, ongoing public health problem and are Similar to other Southeast Asian countries, Indonesia
responsible for 60% of deaths in Southeast Asia [1]. These faces a range of challenges in providing health services
conditions are also strongly correlated with poverty. for the poor. These include unavailability and unafford-
Surveillance of these diseases and their risk factors needs ability of services, as well as lack of adequate staff, trans-
to be improved, and health care systems must be portation, and equipment [2]. Many patients in
strengthened to address Indonesia tend to postpone cancer treatment because of
their lack of knowledge on treatment options, insuffi-
cient financial resources, the side effects of treatment,
* Correspondence: sinta@ugm.ac.id and the paternalistic approach of health professionals
School of Nursing, Faculty of Medicine, Universitas Gadjah Mada, Yogyakarta,
Indonesia

The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Kristanti et al. BMC Palliative Care (2017) Page 2 of 7
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Kristanti et al. BMC Palliative Care (2017) Page 3 of 7
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[3]. The survival rate for with terminal illness are t inclusion criteria and
cancer patients in typically cared for at home s agreed to participate. Of
Indonesia is resultantly by family members [8] Head nurses in selected these, 30 continued for the
lower compared with that who generally have little cancer wards in the major duration of the study.
of other Southeast Asian or no training in teach- ing hospital in
countries [4, 5]. provision of basic care. Yogyakarta identified O
Although a universal The lack of necessary patients who could u
health insurance system knowledge and skills may potentially serve as t
has been in place in the cause family caregivers to research participants. c
Inclusion criteria were: (i) o
country since 2005, it have a lack confidence and m
has not worked as well as feelings of uncertainty, stage 3 or 4 cancer, (ii)
e
planned [6, 7], and which can lead to unease Palliative Performance
economically and anxiety [11]. Family Scale (PPS) score of less m
disadvantaged patients caregivers of patients with than 60, (iii) patients and e
still typically have to advanced stage cancer family caregivers a
rely on family members may have similar consented to participating s
in the study, and (iv) u
to care for them rather experiences [12]. Basic
family caregivers were r
than seeking professional skills training (BST) for e
treatment [8]. family caregivers is functionally literate.
m
Unsurprisingly, wealthier therefore crucial. Following an examination e
pa- tients generally tend of medical charts, 41 n
to have better treatment A potential participants and t
outcomes than financially i their family caregivers The major outcome
disadvantaged ones [9]. m were found to meet the variable, QoL, was
In Indonesia, strong study assessed using the
o European Organization
family bonds underpin
f for Research and
the high degree of
familial involvement Treatment Cancer Quality
s
during patients care and t of Life C30 version 3
hospitalization [10]. u (EORTC QOQL C-
Nurses assume important d 30) [13, 14]. This
roles in activities y instrument is used
The research question worldwide and has
pertaining to daily living,
underlying the present been translated into more
physical, spiritual, social,
pilot study pertained to than 60 languages,
psychosocial,
the effects that BST for including Indonesian [15].
autonomous, and
family caregivers had on The EORTC QLQ-30
financial aspects during
cancer patients quality of consists of 30 questions
periods of hospitalization.
life (QoL). Using two- divided into three
It has also been reported
tailed testing, an subscales: global health
that physicians primarily
intervention was tested status/QoL, functional
focus on physical
to determine how BST scales, and
symptoms, and that
affect the QoL of palliative symptom/single items.
supporting individuals
cancer patients. There are only two
such as social workers
questions on global health
and volunteers play a
M status/QoL scale. The
largely insubstantial role
e functional scale consists of
[10]. At home, the family
t five subscales: phys- ical
provides the majority of
h (PF), role (RF), emotional
care, mostly with no
o (EF), cognitive (CF), and
expert support from
d social (SF).
visiting nurses,
s Symptom/single items
physiotherapists, or
P consist of nine discrete
occupational therapists.
a variables: fatigue (FA),
Indonesia still has a r nausea/vomiting (NV),
lack of formal t pain (PA), dyspnea (DY),
institutions to support i insomnia/sleep (SL),
patients with long-term c
i
appetite loss (AP),
conditions, as seen in the
p constipation (CO),
absence of hospices and
a diarrhea (DI), and
respite care. Therefore,
n
disadvantaged patients
 Kristanti et al. BMC Palliative Care (2017) Page 4 of 7
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financial hardship related objectives and proce-
to illness (FI) [13]. dures, measurement of
The functional and research outcomes, and
symptom/single subscales patient education theory.
are mea- sured on a four-
point Likert scale, from 1 D
(not at all) to 4 (very a
much). An exception is t
a
for the global health
status/QoL scale, which is
c
based on a seven-point o
Likert scale, from 1 l
(very poor) to 7 l
(excellent) [13]. For e
Functional and Global c
health status/QoL, a t
i
higher score indicates a
o
better QoL. In contrast, a n
higher score for symptoms Three training sessions for
and single items indicates the family caregivers were
poorer QoL [14]. provided (Fig. 1). The
first was held at the
I hospital
n
1 week prior to the
t
e patients discharge. The
r family care- givers
v observed an initial
e demonstration by the
n nurse educators, watched
t the video, and then
i
o practiced the skills. Prior
n to this, the selected
We planned an patients had provided
intervention centered on signed informed consent,
a BST educa- tional and baseline data on
package that we developed the patients QoL were
to encourage interaction collected.
between family caregivers
and nurse educators [11,
16]. The package included
a 1-h video (on CD) and a
module consisting of five
chapters on assisting a
bedridden patient with
bathing, providing oral
hygiene, hair washing,
assist- ing with urination
and bowel movements,
and managing feeding
orally and using a
nasogastric tube. Nurse
educa- tors demonstrated
these skills and provided
assistance sessions to
family caregivers for
practicing their skills on
patients. The nurse
educators were given a 1-
day train- ing in advance
about the research
Kristanti et al. BMC Palliative Care (2017) Page 5 of 7
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Fig. 1 Time line and intervention details

Kristanti et al. BMC Palliative Care (2017) Page 6 of 7
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Two weeks later, the effective. Statistical C the patients, over half
nurse educators visited significance was set at p < h had graduated from
individual patients homes 0.05. a senior high school, and
r
to give encouragement to 60% had no previous
a
the family caregivers and c caregiving experience.
assist them in developing R t
their skills in providing e e Q
personal care, and to s r u
provide further informa- u i a
tion if required. On the l s l
t i
third visit, within 1 month t
i t
after patients discharge s c y
from the hospital, nurse Of the 41 participants
educators visited the who entered the study, o o
patients homes and one decided not to f f
collected further data on continue, three could
the patients QoL. An not be reached for p l
interval of 2 weeks contact after the second a i
visit, and seven died be- r f
after the second visit
t e
was chosen as the most fore the program was
i In general, scores for
suitable time be- tween evaluated. This left 30 c almost all items in the
the follow up visits partici- pants who i EORTC QLQ C30
because it was reported completed the study; p
a increased after
in a similar study that their results are
n intervention. As shown
39.3% of cancer patients reported herein (Table
t in Table 2, participants
in a palliative condition 1).
s global health status/QoL
passed away within 3
As shown in Table 1, the ratings significantly
weeks [17].
ratio of female to male improved after
partici- pants was around intervention from M =
3:1. Most patients were 40.27; SD = 17.79 to M =
A
n above 55 years old (37%) 56.94; SD = 18.05 with p
a and approximately one- = 0.001. For the functional
l third were diagnosed with scales, EF and SF
y breast cancer. Most improved after interven-
s participants were not tion, with some positive
i newly diagnosed, as they changes in PF, CF, and
s
reported having been RF. Those last three items
Data were cleaned and
informed more than 5 did not improve
assessed for normality,
months prior. Over 60% significantly after
descrip- tive analysis was
of the participants had a intervention (p = 0.225,
performed using
monthly income of less 0.418, and 0.431,
frequency and mean to
than USD 100. Ten of respectively). As for
analyze patient
30 received chemotherapy symptoms and single
demographics and QoL.
only and most received items, there were
The paired data testing
neither chemotherapy nor significant reductions in
was conducted using
radiotherapy (47%). A FA (p = 0.022), PA (p =
related samples with
closer inspec- tion 0.028), DY (p = 0.02), SL
Wilcoxon Signed Rank
revealed that 77% had (p = 0.013), AP (p = 0.030),
tes. Cohens d test was
moderate functional CO (p = 0.004), and FI (p
used to calculate the
ability based on their PPS =
effect size; scores of 0.2,
score, while 23% had poor 0.009). The other
0.3, and 0.8 were
functional ability. Fifty symptoms, such as nausea
considered small,
percent of participants and diarrhea, showed
moderate, and high,
were being cared for by declining trends, but were
respectively [16]. A
their spouses and 60% of not statistically signifi-
paired t-test and one-
the family caregivers cant (p = 0.243 and 0.097,
way analysis of
were female. Sixty respectively). The
variance (ANOVA) were
percent of family majority of
used to investigate in
caregivers were under 44
which subgroups an
years old, 80% lived with
intervention might be
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Table 1 Demographics data Table 1 Demographics data (Continued)
Characteristics Patient Caregiver Status of employment
(n = 30) (n = 30)
Work 15 (50)
Sex, n (%)

Unemployed 15 (50)
Male 8 (27) 12 (40)
Experience in caregiving
Female 22 (73) 18 (60)
Yes 12 (40)
Age in years
No 18 (60)
18 - 44 9 (30) 18 (60)
45 - 54 10 (33) 8 (27)
> 55 11 (37) 4 (13) effect sizes were small to medium, at 0.100.53, except
Type of Cancer
for the patients
global sex on global
health status/QoL, health status/QoL (p = 0.038),
at 0.92.
Breast 9 (30) Table 3 shows that some subgroups had a significant
effect on QoL. There was a significant difference related
Digestive (colon, recti, sigmoid) 5 (17)
to
Gynaecology (Vulva, Ovarian, Cervical) 5 (17)
DY (p = 0.046), and CO (p = 0.030). The patients
Non Hodgkin Lymphoma 4age
(13) significantly affected the scales of global health
Head and Neck 4status/QoL
(13) (p = 0.002) and FI (p = 0.039). There were also
Osteosarcoma 2significant
(7) effects of the caregivers age on DY (p = 0.031) and
care- givers experience on DY (p = 0.030).
Thyroid 1 (3)
Time since diagnoses (in months)
Discussion
1 to 3 7 (23)
The aim of the current study is piloting and testing an
3 to 5 5 (17) intervention given to the family caregivers on the quality
Table 2 QOL score (EORTC QLQ C-30) pre and post intervention
>5 18 (60) of life of palliative cancer patients. As indicated in the
Income Performance Score (PPS) Results section, there were several items on the QoL
Palliative
< 30 (Poor functioning) 7 (23) Global health Pre
40.27(SD)
(17.79) Post
56.94(SD)
(18.05) 0.92 0.001
< 100 USD/month 19 (63) status/QOL
a
40 60 (Moderate functioning) 23 (77)
100 300 USD/month 8 (27) Functional
(n = 30) Scales
b
reatment
> 300 USD/month 3 (10) Physical (PF)
Subscale Mean (15.98)
11.98 score 17.11 (22/8) Effect
0.26 size P-value
0.225
T Chemotherapy only 10 (33)
Radiotherapy only 1 (3) 3 Role (RF) 11.11 (19.24) 13.33 (21.62) 0.10 0.418

Both chemotherapy & radiotherapy 5 (17) 17 Emotional (EF) 63.33 (30.21) 79.44 (26.77) 0.53 0.003

None 14 (47) 47 Cognitive (CF) 73.89 (24.24) 75.55 (27.24) 0.06 0.431
Education background Social (SF) 20.56 (25.40) 35.56 (33.82) 0.50 0.012
Elementary school 9 (30) 5 (17) Symptoms/Single Items
b

Junior high school 6 (20) 4 (13) Fatigue (FA) 68.33 (24.20) 56.29 (28.12) 0.45 0.022
Senior high school 11 (37) 16 Nausea (NV) 25.00 (28.28) 20.55 (24.24) 0.16 0.243
(53) University 4 (13) 5 Pain (PA) 72.22 (33.99) 57.22 (34.35) 0.43 0.028
(17) Dyspnoea (DY) 38.89 (39.22) 12.22 (28.34) 0.77 0.002
Relationship with patient Insomnia (SL) 57.78 (66.67) 35.56 (36.04) 0.41 0.013
Spouse 15 (50)
Non-spouse 15 (50) Appetite Loss (AP) 60.00 (39.53) 44.44 (36.40) 0.40 0.030

Live with patient Constipation (CO) 32.22 (38.63) 20.00 (34.57) 0.33 0.004

Yes 24 (80) Diarrhoea (DI) 21.11 (30.92) 10.00 (27.88) 0.37 0.097

No 6 (20) a Financial (FI) 78.89 (29.66) 65.55 (33.31) 0.41 0.009

The higher score, the better the level of functioning
b
The higher the score, the worse the symptoms/problems
P < 0.05 indicate significance
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Table 3 Demographic A positive impact of the most important coping despite their being in the
variables that effect intervention may result strategy for individuals dying process [25].
for several reasons. First, facing impending death In summary, most
quality of lifea Variable
although McMillan and from cancer [19]. symptoms declined after
GH EF SF FA PA DY
Weitzner (1998) suggested Providing construct- ive an interven- tion given at
SL AP CO FI Sex patienta that the QoL of patients social support is also a time when terminal
Male 0.038 - in terminal condition proven beneficial in patients tend to suffer a
- - - 0.046 - - decreased mostly because reducing pain and decline after hospital
0.030 - Female of declining physical lowering the number of discharge. These
Age patient
b function- ing, while their depressive symptoms [20]. improvements can be
social and spiritual As participants in the linked to the procedures
< 44 years old 0.002 - -
- - - - - - functioning were rela- current study were provided in the interven-
0.039 tively high [17]. However, mostly immobile, family tion in the current study,
4554 years old improved global health caregivers might become such as showering, hair
status/ QoL of patients in the crucial source for washing, feeding, assisting
> 55 years old
the present study may social support [21]. with toileting, physical
Sex Family caregivera
relate to emo- tional and Provision of basic nursing repositioning, and oral
Male - - social aspects that were care likely provides the hygiene. The latter is
- - - - - - facilitated during the opportunity for social especially important in
- - Female intervention. conversa- tion, which countering side effects of
Age Family Caregiver
b Second, the substantial helps keep the patient chemotherapy and
increase of emotional engaged in family life. radiation, such as dry
< 44 years old - - -
- - 0.031 - - - and social functioning Emotional support also mouth and decreased
- may be attributable to can be enhanced by appetite [26].
4554 years old the interven- tion being involving the patients as A previous meta-
> 55 years old
developed mostly to active participants, as analysis showed that
a
enhance family caregiver this involvement helps interventions given to
Relationship with patient
involvement in palliative maintain the patients family caregivers of
Spouse - - patient care [18]. Being dignity [22] and may en- patients were divided into
- - - - - - to- gether with close hance their personal sense three types: psycho-
- - Non-spouse friends and family of meaning through active education, skills training
Educational background of members is possibly engagement with focused on coping and
family caregiverb palliative care providers problem solving, and
Elementary - - [23, 24]. Dur- ing the therapeutic counseling
- - - - - - training, the nurse [27]. The study made
educators encouraged no mention of skills
- - Junior high
the family caregivers to training, which provides
Senior high
involve the patients in essential information for
University their own care as much as practical steps in handling
Experience in caregiving of possible. routine daily living
a
family caregiver Third, it is also possible activities and personal
Yes - - that providing comfort care. One reason for this
- - - - - - mea- sures, such as difference in protocols
- - No
changing their positions may be the meta-analysis
a and improving their being limited to
Paired t-test
b
One-way ANOVA hygiene, helps patients developed countries.
P < 0.05 indicate significance reduce focus on their Therefore, interventions
phys- ical discomfort and conducted in the
scale that increased makes them more capable current research are
significantly after of staying socially and considered more
intervention, namely, emotionally engaged [23]. appropriate for the con-
global health status/QoL From a palliative care text of this pilot study,
emotional and social perspective, most patients where many terminal
functioning, as well as consider self-esteem and cancer patients live out
seven items on personal image to be their life at home with
symptoms and single important aspects. They their family as a palliative
items, namely, fatigue, want to stay physically care provider, as is very
pain, dyspnea, insomnia, clean and free from common in Indonesia and
appetite loss, constipation, odors and bodily fluids, much of Asia.
and financial issues. and want to have a Family caregivers in
normal appearance Asian countries generally
 Kristanti et al. BMC Palliative Care (2017) Page 7 of 7
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stay with the patient
constantly. They are
usually willing to provide
any type of palliative care
necessary. When the
patient is
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Kristanti et al. BMC Palliative Care (2017) Page 9 of 7
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staying at home and lacks i made to delimit this Conclusions
ability to complete daily t initial study in order to The present study
living activities, most a assess acceptability of the provides essential data,
t outcome measures to this
family caregivers are not which will serve as a basis
i
equipped to handle the vulnerable population. for subsequent
o
challenges involved in n Completion of the advance investigations of the
assisting them [27]. Asian s and follow-up provision of palliative care
patients may also feel The current study questionnaires did not in developing countries. It
more comfortable measured the impact of appear to cause any is recommended that a
receiving help from their family care- givers skills distress for the patients or larger-scale study with the
own relatives. The current training on patients QoL, their relatives. This opens addition of a control group
study used an educational as there is a lack of the door for the next be conducted to further
package consisting of an evidence about specific stage of investigation, delineate the benefits of
instruction manual and nursing education which would be a provision of BST to
informational video, interven- tions in this area randomized controlled family members of can-
along with [27], While limited by the trial of the intervention for cer patients. Because the
demonstrations by nurse small sample patient palliative care with interventions and teaching
educators. The video was population in this pilot terminally ill cancer aids herein were simple
added to provide visual study (n = 30), the results patients in Indonesia, or and affordable, it is also
demonstration and make are unique because there in other Southeast Asian recom- mended that
the manuals instructions are few, if any, studies countries with similar similar studies in urban,
easier to comprehend. that directly address conditions. suburban, and rural areas
Family caregivers can refer intervention protocols for be conducted to investigate
to the manual, which the palliative care differences in acceptance
contains detailed providers of terminal of the program. Given
explanation and pictures, cancer patients from low- that financial aspects are
when they need more to medium-income one of Indonesians main
information. Recent countries [29]. However, concerns, it is recom-
research on similar a positive impact on QoL mended that they also be
interventions using only through palliative care has taken into account in
manuals showed that been demon- strated [30]. future research in an
health professionals used Our study was valuable Indonesian setting.
this as a complementary because, to our knowledge, Finally, prior to any
aid. Health professionals this was the first randomized control trial,
shared a variety of Indonesia-based study it is suggested that
experiences in palliative that attempted, by using psychomet- ric
care, and stated they were an instructional module adaptations are made to
more comfortable using with a man- ual and the EORTC QLQ C-30
their own ways of supplemental video, to to accommodate the
providing information provide basic skills train- economic and cultural
[28]. Therefore, an ing for family caregivers sensitivities of terminally
interventions success may of palliative cancer ill Indonesian patients, and
vary depending on the patients. The intervention to facilitate effect- ive
innova- tions health also attempted to combine interpretation of the
professionals produce. provision of an scores.
educational package with
Abbreviations
S direct teaching sessions, AP: Appetite loss; BST: Basic
t and set up the follow-up skills training; CF: Cognitive
r at home to further functioning; CO:
e Constipation; DI: Diarrhea;
encourage the family
n DY: Dyspnea; EF: Emotional
g caregivers. functioning; EORTC QLQ C30:
The main limitation of European Organization for
t
Research and Treatment
h the present study was the Cancer Quality of Life C30;
s ab- sence of a control FA: Fatigue; FI: Financial
group. However, given hardship related to illness;
a NV: Nausea/vomiting; PA:
the sensitive nature of the Pain; PF: Physical
n topic of death and dying, functioning; PPS: Palliative
d performance scale; QoL:
and the scarcity of
Quality of life; RF: Role
l research in the area of functioning; SF: Social
i palliative care in functioning; SL:
m Indonesia, a decision was Insomnia/sleep
 Kristanti et al. BMC Palliative Care (2017) Page 10 of
16:4 7

Acknowledgements
The authors thank patients and
family caregivers for their study
participation. The authors also
thank the team of nurse educators
for their support. Furthermore, the
authors thank Dr Kathy Ahern, PhD
for her advice in the manuscript.

Funding
The study was funded by Alumni
Reference Group Research Seed
Funding, Australia.

Availability of data and materials

The datasets analysed
during the current study
are available from the
corresponding author on
reasonable request

Authors' contributions
All authors have made substantial
contributions to the conception
and design of the study. MSK
contributed to concept and
designed of the study, produced
training materials, carried out data
collection, extracted the data,
analysed the results, and drafted
the manuscript. SS contributed to
study design, produced training
materials, participated in data
analyses and drafted manuscript.
CE contributed to study design,
contributed to study
materials, and critically
revised the manuscript. All
authors read and approved
the final version.

Competing interests
The authors declare that they have
no competing interests.

Consent for publication

Not applicable.

Ethics approval and consent to

participate
An Ethical approval was granted from
the Ethics Committee of the Faculty
of
Medicine, Universitas
Gadjah Mada, Yogyakarta
number KE/FK/528/EC.
Written informed consents
were received from all
participants.
Kristanti et al. BMC Palliative Care (2017) Page 11 of
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Kristanti et al. BMC Palliative Care (2017)
16:4
Received: 18 January 2016
Accepted: 23 December 2016
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